An Invisible Population in India’s Lockdown – Organ Failure Patients

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As the pandemic of the new coronavirus continues its sweep, the whole world is going through a crisis of health and wellbeing. Prime Minister Narendra Modi placed India under a lockdown for 21 days from March 24, 2020, and which may be extended depending on how the situation evolves over the next two weeks.

Under these circumstances, one group of people – among many – the lockdown is blind to is people suffering from chronic illness owing to organ failure. Organ failure patients don’t have any way to survive other than organ transplants. Every year in India, 1.8 lakh persons suffer from kidney failure, 25,000-30,000 from liver failure or liver cancer and almost 50,000 from heart failure.

The recipients of various organs also amount to a large group, including an annual average of 25,000 cornea, 6,000 kidney, 1,500 liver, and 10-15 heart transplants, according to the Indian Transplant Registry, 2020. This data in turn highlights the number of people who also require medicines, dialysis, regular blood transfusions, dialyses and other forms of therapy simply to get by, let alone perform complex tasks or participate in society. (In 2019, the Directorate General of Health Services reported that more than 2.5 lakh people in India suffer from last-stage kidney disease every year and require dialysis thrice a week and regularly.)

Those who have undergone organ transplants continue to face other difficulties. After the transplantation procedure, organ recipients still have to continue with lifelong medicine regimens. Many of these patients also live in remote areas or villages, and while several dialysis centres are available, they are located mostly within cities. Since supply chains have also been hit, it is not clear if hospitals also have all the drugs they need, to treat COVID-19 as well as a raft of other communicable and non-communicable diseases.

Considering driving personal vehicles has been banned in the present lockdown and public transport has been kept to the bare minimum where going out is possible, most – if not all – of these patients cannot get to hospitals on time or even regularly to receive the therapies and to pharmacies to get the critical drugs they need. Additionally, and in normal circumstances, each patient can purchase only 15 days’ worth of medicines in advance from pharmacies, which means the lockdown leaves them in a more precarious situation.

The Sawai Man Singh Hospital in Jaipur offers a model for other states to follow in this regard. On March 29, the Government of Rajasthan established a ‘patient control room’ here. Here, those people dealing with organ failure and chronic illnesses can specify the drugs they require, and the hospital staff will make them available either at the nearest medical store or at the patients’ doorstep of the patient. The Centre should consider making this option available around the country.

Finally, there is the issue of mental health compounded by, among other factors, the need for physical distancing. Public health officials continue to reinforce the need for physical distancing to ‘flatten the curve’ and reduce the number of people who have to be hospitalised at the same time for COVID-19-related symptoms. However, physical distancing also entails less contact with the family and, in general, people who can help post-transplant patients get better. This in turn causes emotional isolation, and affects or even postpones healing.

One of the features of the current pandemic is the amount of attention it has been receiving – on the news and in the social media. As a result, it might seem to be the worst problem confronting us today. But in India at least, there are even worse communicable (malaria, tuberculosis, etc.) and non-communicable (diabetes, hypertension, etc.) illnesses that we must grapple with, plus problems of livelihood, sanitation, water, availability of toilets, etc. COVID-19 cannot become an excuse to neglect, even temporarily, any of these other issues, which includes the needs of people dealing with organ failure as well.

They need early and timely attention from the Government of India to ensure they have access to medicines at the nearest chemists, and to ensure they can access healthcare facilities and adequate medical and emotional support. A lockdown to ostensibly protect against one disease cannot imperil those suffering from others.

Nishtha Mishra is a doctoral candidate and M. Sivakami is a professor at the School of Health Systems Studies – both at the Tata Institute of Social Sciences, Mumbai.